Autism in the workplace - Written for the TUC by Janine Booth - date: May 2014
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date: May 2014 Autism in the workplace Written for the TUC by Janine Booth
About the author
Janine Booth, is a member of the TUC Disabled Workers Committee and the
committee of Autistic-UK. She is a former member of the national Council of
Executives of the Rail, Maritime and Transport union (RMT). Janine runs
Autism in the Workplace training events with the Workers’ Educational
Association (WEA). You can contact Janine by emailing j.booth@rmt.org.uk
Introduction by the General Secretary
Autism is a term covering a wide range of conditions that reflect neurological
differences among people: the barriers placed in the way of workers who have
an autistic condition may affect their lives at work. This first ever TUC guide
to autism aims to inform trade union officers, representatives and members of
the facts, and advise how to support members who are autistic to secure the
adjustments they may need, and to which they are legally entitled. The author
is an expert who is already successfully challenging unions and employers to
understand neurological diversity and its consequences for neuroatypical
workers and I hope that many unions will make use of this expertise to equip
themselves to tackle the challenges and obstacles faced by ignorance and
prejudice faced by workers who are autistic.
Frances O’Grady
TUC General Secretary April 2014
3Contents
5 The social versus medical model
9 What is autism?
13 Myths and facts
17 Autism is a trade union issue
19 How workplaces can create difficulties for autistic workers
23 How workplaces can create difficulties for workers with autistic
dependants
26 Making workplaces autism-friendly
28 Nothing about autistic people without autistic people
30 Hate crime
32 Autism and austerity
35 Autism in parliament
36 A guide to the law
40 TUC Disabled Workers' Conference policy
441 What your union can do
45 Useful websites
46 Glossary
49 Appendix: an autism timeline
5Section one
1 The social versus medical model
There are different ways of understanding disability. The two main ones are:
the social model
the medical model
The trade union movement uses the social model of disability. This section
explains the social model and how it applies to autism. The rest of this
handbook uses the social model to understand autism in the workplace and
trade union strategies for taking up this issue.
Social model of disability
The social model looks at the barriers that our society puts in the way of
disabled (in this case, autistic) people’s participation, including both attitudes
and practical barriers. It aims to remove unnecessary barriers which prevent
disabled people accessing work and services and living independently.
The social model identifies the problems faced by disabled people as a
consequence of external factors. For example, bright lighting in a workplace
might cause distress to an autistic person who has sensory sensitivity to light.
The social model distinguishes between impairment and disability.
Impairment is described as a characteristic or long term trait which may or
may not result from an injury or disease or condition. For example, a person
on the autistic spectrum may have executive function impairment (explained in
section two below).
Disability is the difficulty experienced by people with an impairment by society
not taking sufficient measures to take account of their needs. For example, an
individual is not prevented from carrying out a sudden change in working
practices by being autistic, but by the employer not giving enough notice of
and preparation for the change.
The social model identifies attitudes which may impede disabled people’s
participation and equality. There is prejudice and ignorance surrounding
autism. There are also workplace practices, procedures, cultures, unwritten
rules and communication forms which do not take account of people on the
autistic spectrum.
Trades Union Congress Autism in the workplace 7The social versus medical model
Medical model of disability
The medical model presents the impairment as the cause of disabled people’s
disadvantage and exclusion. If an employer decides that a person cannot work
for his/her company because s/he is autistic, rather than considering how to
make the workplace suitable for an autistic person to work in, that employer is
probably being influenced by the medical model of disability.
Unfortunately, the medical model dominates much political and legal decision-
making.
The trade union response
The trade union movement supports the social model of disability. In
individual representation, collective bargaining, drawing up demands and
campaigning for them, the most effective approach for trade unions to follow
is to identify the factors in the workplace environment and working conditions
that disable the autistic worker. Then, the union can identify and fight for the
changes that would remove these factors.
Trades Union Congress Autism in the workplace 8Section two
2 What is autism?
Neurological diversity
Autism is an example of neurological diversity, or neurodiversity. Humanity is
a neurologically diverse species – people have different neurological make-up,
different ‘brain wiring’. A population – whether that is a workforce, the people
of a particular country, an age group, etc – is neurologically diverse or
neurodiverse.
Autistic people are neurologically atypical or neuroatypical.
Other neurological conditions include dyslexia, dyspraxia, dyscalculia and
attention deficit hyperactivity disorder (ADHD).
People without a neurological condition are referred to as neurologically
typical, or neurotypical – or even ‘NT’!
Autism
Firstly, it is worth noting that understanding of autism is growing, but is still
limited. We have a lot further to go!
The National Autistic Society describes autism as ‘a lifelong developmental
disability’. However, some autistic people find this definition quite negative.
A more neutral and descriptive definition might be: Autistic Spectrum
Conditions are neurological developmental conditions. They occur when
atypical (unusual) brain connections lead to atypical development. These
differences in the way the brain functions lead to particular challenges and
abilities and unusual development.
Autism is a spectrum
Autism affects different people in different ways.
You may have heard terms such as Asperger syndrome, High functioning
autism, Low functioning autism, Classic autism or PDD-NOS (Pervasive
Development Disorder – Not Otherwise Specified). All are part of the autistic
spectrum.
Some of these distinctions may be unhelpful. For example, a person labelled
‘low-functioning autistic’ may find that his/her skills and abilities are
overlooked; while a person labelled ‘high-functioning autistic’ may find that
his/her needs are overlooked. It is important that each person with autism is
recognised as an individual.
Trades Union Congress Autism in the workplace 9What is autism?
“The autistic spectrum covers a very wide range of people, and these people
don’t always fit neatly into the available groupings. ... Essentially, the people in
all the above groups are all a part of the autistic spectrum ... The personality
and needs assessment of a person on the spectrum should be looked at on an
individual basis, rather than on the basis of a label.” Aspies For Freedom
What the manual says
The Diagnostic and Statistical Manual of Mental Disorders is the American
Psychiatric Association’s classification and diagnostic tool, and provides a
medical definition of autism. Its Fifth Edition, abbreviated as DSM-5, was
published in 2013. Previous editions had listed ‘Asperger’s Disorder’
separately, but DSM-5 abandoned this practice, and includes a single definition
of Autism Spectrum Disorder.
Social communication
People on the autistic spectrum may communicate differently from typically-
developing people. A minority do not speak.
Social interaction
Typically-developing people learn through social interaction, from childhood.
People on the autistic spectrum may not do so, and may only learn social
‘rules’ by being taught, by themselves or others.
You can think of this as being similar to how people learn languages. Most
people learn their first language by ‘picking it up’ from the people they live
with. They may then learn another language by studying it, for example at
school.
So, neurotypical people learn ‘social skills’ through social interaction, like you
learned your first language. People on the autistic spectrum may not do so, and
may have to study to learn ‘social skills’ – like you might have learned an
additional language at school.
Many social ‘rules’ are not written down or explained – it is assumed that
people will know them. But how is an autistic person supposed to know what
s/he is supposed to say or do?
Eye contact may be uncomfortable or difficult for an autistic person.
“I can actually listen better if I don’t make eye contact. It’s an autism thing.
Please be understanding.” Campaign T-shirt
A person with autism may find it difficult to ‘read’ emotions in people’s facial
expressions.
Trades Union Congress Autism in the workplace 10A person with autism may find it difficult to ‘read’ social cues eg. when to
speak; when to stop speaking; when a conversation is over; how close to stand
to someone.
People with autism tend to think literally
However, typically-developing people do not always speak literally. So from an
autistic person’s view, neurotypical people can be hard to understand and seem
very odd at times! NTs often:
say things that they don’t mean (‘I’m going to kill her’)
tell you to do things that they don’t want you to do (‘Pull your socks up’)
ask questions but don’t want an answer (‘Why is he such a #*@#?!’)
ask questions but don’t want an honest answer (‘How are you?’)
answer a question with an answer to a different question (‘Are you having
your meal break now?’ ‘I’ve got to finish this report.’)
use figures of speech (‘You’ve got ants in your pants’)
don’t say things they do mean (‘I’m not interested in this subject’)
say things in an illogical order (‘It’s time for the shop to close – make an
announcement’)
laugh when there is no obvious joke (‘Terrible weather – ha ha ha!’)
think you have said things that you haven’t (‘You’re saying I’m wrong’)
say the opposite of what they mean (they call this sarcasm) (‘Yeah, right!’)
expect you to figure this out!
Rules, routines and schedules
People on the autistic spectrum tend to be comfortable when rules, routines
and schedules are adhered to, and can become uncomfortable or distressed
when they are broken, disrupted or changed.
Special interests
“Many people with autism have intense special interests, often from a fairly
young age. These can change over time or be lifelong, and can be anything
from art or music, to trains or computers. Some people with autism may
eventually be able to work or study in related areas. For others, it will remain a
hobby.” National Autistic Society
It is notable that in our society, if an autistic person has a ‘special interest’ in,
say, UFOs or train timetables, this may be seen as eccentric or as an unhealthy
Trades Union Congress Autism in the workplace 11What is autism?
obsession – but that non-autistic people’s obsessions with boy bands or
football teams are usually considered perfectly normal!
Executive function
This is the set of abilities that enable people to translate motivation into action,
to:
START doing something
CHANGE what they are doing
STOP doing something once started
manage time.
People with autism may have impaired executive function.
Motor function
People with autism may have impaired motor function: balance; movement;
co-ordination.
Sensory sensitivity
People on the autistic spectrum may be intensely sensitive (hypersensitive) or
under-sensitive (hyposensitive) to one or more sensory stimuli eg. heat, cold,
sound, light, dark, textures, smells, pain.
Sensory overload
For many autistic people, the constant bombardment of sound, light, colours,
patterns, numbers, temperatures, textures, smells and feelings can become too
much.
“My brain lets all this in … It doesn’t seem to have a filter … so I can take in
and process loads of information … and think about it constantly … but it can
overwhelm me.”
Distress
It is little wonder that with all this going on – communication barriers,
frustrations, misunderstandings, sensory sensitivity, sensory overload,
unexpected changes, rules being broken, discrimination, prejudice – that many
autistic people experience stress, anxiety, and sometimes, ‘meltdowns’.
Self-stimulatory behaviours (‘stimming’)
Many autistic people engage in habitual, repetitive movements that provide
comfort and/or stimulation eg. rocking, spinning, jumping, skipping.
Trades Union Congress Autism in the workplace 12Section three
3 Myths and facts
Beware of stereotypes; they can overlook people’s individuality,
and lead to mocking and bullying.
‘Autism is one of those trendy ‘conditions’ that everyone seems to have these
days.’
This is a commonly-heard view, but an inaccurate prejudice which undermines
the very real experiences of people with autism and their friends and families.
‘Autism is just an excuse for bad or anti-social behaviour.’
This is another commonly-heard view, but again, an inaccurate prejudice. ‘Bad
behaviour’ can just be unusual or eccentric behaviour which may not harm
anyone. Behaviour that does cause difficulties may be the product of distress,
in a situation that does not take into account the needs of a person with autism
eg. sensory overload, change to routines, unkind comments.
‘Autism is a disability.’
Yes, autism is a disability, and people with autism are entitled to the support,
protections, welfare benefits etc that disabled people should have.
However, many autistic people assert that autism is not just or always a
disability, it is a difference, and that it has positive aspects that are often
overlooked.
Using the social model of disability, we can see that society disables people
with autism.
‘Autism is a learning disability.’
Autism is not in itself a learning disability, but it can often be accompanied by
learning disability. It is estimated that 60–70 per cent of people on the autism
spectrum have a learning disability.
Trades Union Congress Autism in the workplace 13Myths and facts
‘Autism is a mental illness.’
Autism is not in itself a mental illness. Autistic people may be more vulnerable
to developing mental health problems, due to distress caused by social conflict,
sensory overload, misunderstandings, discrimination and other factors.
‘Autism is a tragedy.’
Autism can certainly have a big impact on individuals and families, who can
face great difficulty and distress. However, portraying autism as a ‘tragedy’ can
have very negative consequences for autistic people.
“Negative media coverage and deliberate pity campaigning have created the
public opinion that autism is a “tragedy”, and that people with autism have no
hope of achieving anything.
“The majority of autism fundraising is currently generated using “pity”
campaigning, suggesting that autism is tragedy, disease, or epidemic that needs
to be stopped.
“This “tragedy” view of autism is extremely damaging to autistic people ... It
causes employment discrimination, it worsens social isolation, and it leads
some parents to give up on helping their children, in favour of holding onto a
false hope of a cure.
“Autism isn’t a tragedy, or a side-effect of genius – it’s a difference to be
valued.” Aspies For Freedom
‘Autistic people are like that bloke in Rainman.’
Dustin Hoffman’s character Raymond Babbit was based on Kim Peek, who
was probably not autistic! He did have a neurological condition, and was a
‘savant’ (meaning that he could memorise and recall a remarkably large
amount of information).
Some autistic people may be like Raymond, but autism is a spectrum, and
many are not like him.
While some people on the autistic spectrum may have ‘special talents’ or
unusual, striking abilities, it is unfair to expect all autistic people to be like
this, or to treat their abilities like ‘party tricks’.
‘Autistic people are of low intelligence.’
No. Autism is a spectrum, and includes people across the range of intelligence.
‘Autistic people are unable to empathise with others.’
Trades Union Congress Autism in the workplace 14People on the autistic spectrum are often thought to be unable to empathise.
However, it may be more accurate to say that autistic people empathise
differently from the way that neurotypical people do. One theory is that
autistic people lack ‘cognitive empathy’ (the ability to predict others’
intentions), but have ‘affective empathy’ (the ability to share others’ feelings)
and ‘compassionate empathy’ (the desire to help others).
‘Autism mainly affects boys and men.’
Many more boys and men than girls and women are diagnosed as being on the
autism spectrum.
However, these statistics may be skewed by diagnostics being geared towards
autistic traits that show themselves more often in men/boys than in
women/girls. Socially-constructed ideas about gender, and about what is
‘normal’ or ‘abnormal’ for boys and girls to do, may also influence who gets
diagnosed with autism.
‘Autistic people are weirdos with no social skills.’
This is a judgemental view that labels and stigmatises people. It is based on a
narrow view of ‘social skills’ centred on neurotypicality.
Dismissing people in this way can prevent them getting support with social
interactions. This view detracts from employers’ and institutions’ responsibility
to adapt to and engage with people with autism.
‘Once you have met one person with autism, you know what autistic people
are like.’
Autism is a spectrum; autistic people are individual and differ from each other.
Once you have met one person with autism, you ... have met one person with
autism!
‘Autism is caused by vaccinations and other chemicals.’
The theory that the MMR vaccine caused autism has been discredited.
There have been similar theories concerning other vaccinations, lead, and other
substances, but none has yet gained general scientific endorsement.
The fear caused by this theory led to many parents not having their children
vaccinated, and eventually to higher rates of measles. In Swansea in 2012-13, a
measles outbreak saw more than 1,200 people fall ill, 88 visit hospital and one
Trades Union Congress Autism in the workplace 15Myths and facts
person die. It is a reflection on society’s fear of autism that so many people
were prepared to expose their children to this risk in order to ‘avoid’ autism.
‘Autism runs in families.’
Scientists are still not certain of the cause of autism, but believe it may be an
interaction of various factors, including genetic predisposition.
‘If there is no cure for autism yet, we should prioritise developing one.’
There is no cure for autism.
Many people would welcome progress in alleviating the more distressing
aspects of autism. But many of these could be alleviated by better support,
services and understanding from society; an end to prejudice and
discrimination; and an acceptance that humanity is neurologically diverse.
Many people with autism do not want to be cured, seeing their autism as a
difference with positive aspects, and wanting support and inclusion not a cure.
Many autistic people are also concerned that the search for a cure is detracting
from support and campaigning for social change.
‘There are medications, therapies and treatments for autism.’
There are no medications to treat autism. People may use medications to treat
conditions that may be associated with autism e.g. depression.
There are various therapies, treatments and support promoted to people with
autism or their carers. Some are helpful, such as speech and language therapy,
learning support assistants, housing support, specialised medical services, and
employment support services. But there are others which many people feel are
unproven or even harmful e.g. electro-convulsive therapy, aversive behavioural
therapies, restraints, restriction of non-harmful stimming and even exorcism.
Trades Union Congress Autism in the workplace 16Section four
4 Autism is a trade union issue
Autism is an issue for trade unions, because:
Most autistic people can work, including in ‘normal’ (whatever that may
mean!) workplaces.
Where adults with autism do not work, it is often because working
conditions are unsuitable, and/or because they have had jobs but have not
been able to continue with them because of issues such bullying,
discrimination or a lack of reasonable adjustments.
Many trade union members have caring responsibility for autistic
dependants.
Parents of autistic kids (or carers of adult autistic dependants) are entitled to
work – and may well need to.
Autistic kids of school age will usually be attending school.
Appropriate care for autistic children may well not mean isolation at home
with a parent.
Trade unions must speak up for autistic workers, but not because autistic
workers cannot speak up for themselves.
People with autism have various means of communication – some are more
verbal than others.
Trade unions are the bodies through which autistic and other workers can
organise and speak up for themselves.
Trade unions are working-class organisations, and the working class is
neurologically diverse. Trade unions must unite all workers, and overcome
division and discrimination.
Understanding autism can help trade unions improve our own ways of
working.
Autism, unemployment and under-employment
There are about 332,600 people of working age in the UK with an autism
spectrum disorder (ASD).
Only 15 per cent of adults with autism are in full-time employment; only 9 per
cent are in part-time employments.
Trades Union Congress Autism in the workplace 17Autism is a trade union issue
Fifty-one per cent of adults with autism in the UK have spent time with neither
a job nor access to benefits, 10 per cent of those having been in this position
for a decade or more.
Sixty-one per cent of those out of work say they want to work.
Seventy-nine per cent of those on Incapacity Benefit say they want to work.
Fifty-three per cent of adults with autism said they want help to find work, but
only 10 per cent are getting the support.
Twenty-six per cent of graduates with autism are unemployed.
(above stats: National Autistic Society)
Only 11 per cent of carers who have children with autism work full-time, and
70 per cent say the lack of appropriate care facilities stops them working.
(Ambitious About Autism)
“Jack, 12, ran away from his school in Hertfordshire, broke into his own
home and rang his mum to say that he was hungry. The school insisted that his
mum take him home every lunchtime because it ‘cannot cope’ with him. Jack’s
mother had to give up her job. A volunteer supporter is trying to get her some
free specialist help so she can ‘take on the system’ and get Jack back to
school.” The Observer magazine, 28 October 2007
Trades Union Congress Autism in the workplace 18Section five
5 How workplaces can create
difficulties for autistic workers
Workplaces and employers make work difficult for autistic workers for the
following reasons:
Discrimination: Treating the autistic worker differently from, less favourably
than, others.
Bullying by management, including ridicule and physical/ verbal abuse.
Lack of communication and support.
Andrew Beck, who has Asperger's Syndrome and learning difficulties, had
worked as a golf club green keeper since 1986. He had no problems at work
until the appointment of a new head green keeper in 1999. His new boss:
- told him to wear highly visible clothing and a red cap to distinguish him from
other staff and to alert golfers to his presence
- banned him from using a motorised vehicle and made him cart heavy
equipment in a wheelbarrow
- gave Andrew duties which involved an unfair amount of heavy work, often
without breaks of lighter work, in contrast to other green keepers.
- approached him from behind and violently knocked a rake out of his hands,
then pushed him out of the way, using bad language.
- accused him of not pulling his weight and used a stream of obscenities.
- subjected Andrew to a cheap joke by giving him a child’s game as his staff
Christmas present.
- gave him a verbal warning because of alleged numerous instances of failing to
carry out tasks.
The employer did not communicate with Andrew properly and he had no-one
to talk about his anxieties. In 2007, Andrew resigned because of continuing
pressure and its effect on his health. Andrew won an Employment Tribunal
claim for constructive dismissal and disability discrimination, and was
awarded £78,000.
Trades Union Congress Autism in the workplace 19How workplaces can create difficulties for autistic workers
Preventing an autistic worker from carrying out duties or using equipment
when there is no valid reason reason to do so.
“The first line manager to be informed of my Asperger’s reacted by
recommending that I be excluded from presenting results at conferences, on the
grounds that I didn’t give a ‘favourable impression’.”
Louise, formerly employed in the scientific civil service
Rates of pay: An employer might pay a worker less than the rate for the job,
using the autism as a pretext or excuse.
Exploitation: An employer may think that s/he can ‘get away with’ treating an
autistic employee badly.
Adam O’Dee, who has Asperger’s syndrome and dyslexia, worked as a chef at
a hotel from February 2010, having been introduced by Remploy, which helps
disabled people find work.
His boss paid him £95 per week – less than half the minimum wage – because
he thought he could get away with it. He was not paid for working extra hours
at weekends and busy times like Christmas.
The boss claimed that Adam had to be ‘carried and pampered’. He threatened
to sack Adam for ‘taking too much off the end of a cucumber’; and threw
frozen bread rolls around the kitchen after wrongly blaming him for not taking
them out of the freezer.
Eventually, Adam resigned, complaining of harassment and victimisation.
Adam won an Employment Tribunal claim for unfair dismissal, disability
discrimination and breach of minimum wage law, and was awarded £40,000+.
New work processes: The imposition of new arrangements at work may cause
difficulties for workers on the autistic spectrum.
“Following a change in working practices it became apparent that my [autistic]
son could not cope with the increased demands and the conflicting
requirements of the job role. Having changed from a ‘job and finish’ work
pattern to one that involved prioritising, swapping and changing, he became
very ill, depressed and stressed, resulting in a breakdown. Once he became ill,
his duties were changed and his role altered, he was allocated a mentor and did
a phased return to work.” Mother of an autistic postal worker
Past experiences: Working conditions in the past may have caused difficulties
for the worker, perhaps especially when the law was weaker.
Unemployment: Autistic workers are more likely to have periods of
unemployment, often due to losing or leaving a job because conditions are
unsuitable.
Trades Union Congress Autism in the workplace 20Self-confidence may be decreased by experiences of discrimination or bullying.
Performance management regimes may cause undue pressure and distress to
autistic workers.
Working environment: Autistic workers may need a ‘benign’ environment with
fewer distressing factors.
“I was out of work for 15 months after I was dismissed in 1991, when there
was no disability legislation requiring employers to make ‘reasonable
adjustments’ to support my performance at work. I appealed against dismissal
with the support of my trade union, but was downgraded as there was no
Disability Discrimination Act to ensure that I was transferred to another job
on the same grade. I had to wait till January 1994 to be re-employed within
the Civil Service.
“I experienced bullying with performance again in 2004. My self-confidence
since 1991 was destroyed and I felt deterred from striving for promotion. I felt
ashamed of my condition and could never trust any manager or employer.
“Recently, I have been coming out in the open as a disabled person. My main
area of weakness is a learning disability associated with new duties. I need
more time than others to become accustomed to the technical duties.
“When I revealed my condition to my line manager in 2005, I asked to work in
a benign environment with a supporting letter from my doctor. I was, then,
made to feel that I was not being bullied. As a result, my performance
improved.” Civil servant
Managers being overly ‘bossy’ can distress autistic (and other) workers.
Disruption of routines.
A worker with undiagnosed autism may not get support or adjustments.
Contracting-out enables third-party companies to insist that workers are
removed, even sacked, just because they do not like the worker concerned.
“I represented a member who didn’t know he was on the spectrum. But he
shows all the classic signs. He likes routine, and everything is black-and-white.
“He keeps getting into trouble at work primarily when people boss him about
and ruin his routine. His last employers said they didn't know he needed help
(even though it is clear that he does on first meeting him). I got them to use
reasonable adjustment by moving him away from destructive personalities. But
by then it was too late as the contractor wanted client removal. Upshot: I got
him an extra 9 months pay and he has another job.” Kevin, RMT union
representative
Expecting people to abide by ‘social rules’ at work without ever specifying
what they are.
Trades Union Congress Autism in the workplace 21How workplaces can create difficulties for autistic workers
Problems with assessment and/or promotion processes.
Making judgements about a worker’s social interaction based on neurotypical
standards e.g. not hiring someone because s/he did not make eye contact
during interview, assuming s/he was disinterested or dishonest.
“Think how it feels that we, of all people, who have such powerfully single-
minded vocations, and hunger more than most to fulfil our vocations, must
everywhere seem to be prevented by those eagle-eyed gatekeepers, the
networkers, the social police who will prevent us from accessing the resources
we need because we fail an irrelevant eye-contact test, or the right-kind-of-
smile-on-the-way-to-the-water-cooler test.” Judy Singer, Foreword to Jean
Kearns Miller, “Women From Another Planet?”
Stress or anxiety.
Colleagues or managers misunderstanding you.
Feeling ‘left out’ socially.
Conflict with colleagues or managers.
Misunderstanding rules, policies or instructions.
Difficulties organising your work.
Feeling that autistic positives/skills are not recognised.
Frustration with others’ poor organisation of work.
Timekeeping (either yours or others’).
Unexpected events or disruption of work schedule.
“We had work meetings that would regularly start late – sometimes several
hours after the scheduled time. I found it so distressing that by the time the
meeting started, I was mentally exhausted and found it difficult to concentrate
and keep my temper in the meeting. With a change in office personnel,
meetings started on time and my working life got so much better!” Voluntary
sector employee
Irregular working hours.
Sickness/absence policies.
Dealing with diagnosis as an adult.
Sensory issues eg. noise, light, smell.
Trades Union Congress Autism in the workplace 22Section six
How workplaces can create
difficulties for workers with
autistic dependants
Refusal of time off: An employer may refuse a request for time off, for example
a career break or a period of leave to adjust and make arrangements when a
dependant is diagnosed with autism.
Childcare: Few employers provide workplace childcare; of those that do, few
provide care suitable for autistic children.
Career progression being held back.
Unkind comments or ‘jokes’: by managers or workmates.
Stress and isolation: being (or thinking you are) the only person in this
position.
“When my son was small, he had behavioural problems, and speech and
language delay. Childcare was tricky. When he was four, he got his diagnosis
of autism. I was working as a marketing manager for a children’s charity. I
asked for six months unpaid leave to get myself together and sort out
provisions to meet his needs. They refused, so I resigned.
“I spent 18 months taking him to appointments, getting a Statement, and
settling him into school. I went back to full-time work when he was six. I had
to take a step back in my career. I had to take time off for appointments, but
my boss was fine about it.
“One colleague used to make jokes about people ‘being autistic’. One day
when he made a joke I marched up to him and said to the office that if I heard
one more ‘autism’ joke, I would punch the next person. Not a recommended
way of approaching things, but nobody ever made that joke again ... All
parents have a certain amount of stress, but it is hard to share when you are
thinking about the “meltdown” that your kid had because they didn’t
remember where they’d put their homework.” Former charity worker
Need for regular working hours to ensure predictability for the child’s routine.
Stress affecting health and relationships.
Trades Union Congress Autism in the workplace 23How workplaces can create difficulties for workers with autistic
dependants
Lack of care/support by employer: who may see the employee’s caring
responsibilities as a problem.
Discrimination.
Rates of pay: A low rate of pay will make it harder for a worker to exercise
options like taking unpaid leave or working part-time.
Business ethic: The notion that a public service has to run as a business can
lead to employers not providing support or adjustments if that is considered
too expensive.
“I used to work on a railway station. I have a young son, Christy, who has
several disabilities, including autism/Aspergers. I am a single mum, after the
pressures of trying to balance work and parenting broke up my marriage to
Christy’s dad.
“I used to do late shifts, but a new manager told me I had to work shifts
around a roster. This was very disruptive for Christy, who relies on a
predictable daily routine. His behaviour became problematic, with more
frequent ‘meltdowns’. I had to take time off, and became ill due to stress. The
company issued me with warnings for absence; my manager told me ‘We are
running a business, not a crèche’.
“Like many autistic kids, Christy did not sleep well, so I was losing sleep too. I
had commendations for my work, but I felt that my employer considered me a
problem not an asset. A manager said to me, ‘You should consider what your
priorities are’, implying that I could not be both a railway worker and the
mother of an autistic son. This manager suggested I go part-time, but I would
not be able to live on a part-time wage.
“They stopped me doing work projects (eg. school visits, first aid) and stopped
me doing a secondment and taking promotion three times. Eventually, I had no
choice but to leave.
“I took my case to Employment Tribunal, but while my employer admitted
some failings and was prepared to settle, their lawyers found a technicality and
got my claim kicked out. I only got an apology.” Nikki, former railway worker
Getting time off work to attend appointments.
Being allowed to leave work to deal with an emergency; lateness or absence
due to emergencies.
Loss of income due to unpaid leave.
“I did shiftwork. I had to take Saturdays off to take my son Joe to therapy.
The law gave me the right to take this leave, but it is only an entitlement to
unpaid leave, and my employer would not go further than this legal minimum.
Trades Union Congress Autism in the workplace 24So every time I was rostered to work on a Saturday, I lost a day’s pay. It added
up to quite a lot.” John, railway worker
Shift patterns or irregular working hours.
Trades Union Congress Autism in the workplace 25Section seven
6 Making workplaces autism-
friendly
Many employers assume that they do not need to make any changes until a
worker identifies him/herself as autistic and requests adjustments (if they even
think about the issue at all!). However, there are plenty of changes that an
employer can implement to make the workplace more autism-friendly before
an individual requests it. The advantages of doing this are:
It will benefit workers who may not be aware that they are on the autism
spectrum, who do not have a formal diagnosis, who do not feel ready to
‘come out’ and/or do not have the confidence to ask for changes.
A workplace that is more autism-friendly is one that recognises neurological
diversity, and is therefore a workplace that is better for all workers.
It approaches the issue as a collective issue rather than an individual one –
and collective action is what trade unions are all about!
Having possible adjustments for individuals listed in a collective policy or
agreement will make it easier for the individual to request and receive them
when the need arises.
Whether or not there is an identified autistic employee in the workplace, the
union may table to the employer demands for:
a relaxation space in the workplace: e.g. a quiet room
all changes to working practices to be negotiated with the union, and proper
notice given before they are introduced
reduction in sensory distraction/overload in the workplace: e.g. maximise
natural light; enable easy control of light, temperature etc; reduce strong
smells information about autism, and about support services, available so
that all workers can access it
the company’s welfare and/or occupational health services to be equipped to
provide assistance
training for managers and others about autism, including recognising autistic
positives and skills
providing paid time off for trade union representatives to attend trade union
training and events about autism
all instructions and policies to be written and communicated clearly and
accurately
Trades Union Congress Autism in the workplace 26 a variety of tools to assist personal work organisation, for example visual
timetables, organiser apps
that only objective criteria are used for assessment/promotion
that work schedules are adhered to
inclusion of autism in harassment and bullying policies, to minimise
harassment and bullying of autistic workers and so that managers or
employees who bully or discriminate against autistic workers are dealt with
appropriately.
Reasonable adjustments for individual autistic workers might include:
paid time off when needed
fixed hours rather than variable shifts
reducing specific sensory stimuli in the workplace, e.g. locating that
individual’s workstation in a quieter or less bright part of the office
change of work location, for example to be nearer home, or nearer support
facilities, or to a work location which is quieter or less over-stimulating
extra breaks to enable relaxation
providing a mentor
individual support where schedules are unavoidably disrupted and when
changes are introduced
adjustment to the way in which assessments are carried out
a clear routine and work schedule
a personal workstation (rather than sharing a workstation or ‘hot-desking’)
specific tools to aid work organisation, such as a visual timetable or
organiser app
relaxation of triggers for disciplinary action for matters such as sickness
absence or mistakes arising from executive function impairment
additional training time off for treatment/appointments, as part of a policy
for disability leave
re-allocating some work to colleagues, with their agreement.
Access To Work funding may be available for some of these measures. You can
see more information about this here: https://www.gov.uk/access-to-
work/overview.
Trades Union Congress Autism in the workplace 27Section eight
7 Nothing about autistic people
without autistic people
The trade union movement supports the demand of the disabled people’s
movement: ‘Nothing About Us Without Us’.
Many trade unions have structures for disabled members; if so, it may be
useful to invite and welcome autistic members’ involvement in these.
There are organisations of autistic people, and trade unionists may benefit
from their expertise.
The UN Convention on the Rights of Persons with Disabilities, Article 4.3,
states that ‘In … decision-making processes concerning issues relating to
persons with disabilities, States Parties shall involve persons with disabilities,
including children with disabilities, through their representative organisations.’
However, in March 2012, the Autistic Rights Movement UK (now Autistic-
UK) complained that the government’s National Autism Programme Board
(APB) had been meeting since March 2010 with no involvement of autistic
people’s organisations.
“Successive British governments have failed to understand (or have wilfully
refused to understand) the importance of Disabled People’s Organisation
(DPOs) – organisation of disabled people not organisations for disabled
people.”
ARM-UK (now Autistic-UK), March 2012
Medical professionals and some charities provide useful services and resources
for people with autism and for those supporting them. However, while some
may campaign in the interests of people with autism, this does not necessarily
mean that they speak for people with autism.
Moreover, some charities have come into conflict with trade unions, and/or
pursue policies which are at odds with those of trade unions. For example, in
2013/14, teaching unions NUT and NASUWT were in dispute with the
National Autistic Society about terms and conditions for staff at its schools.
The National Autistic Society sponsors several ‘free schools’, which teaching
unions oppose.
Trades Union Congress Autism in the workplace 28Mind your language
See the TUC briefing, Words Can Never Hurt Me?, for a detailed explanation
of how choice of language can help or hinder our campaigning for disabled
rights.
The language we use can reinforce negative stereotypes of autistic people, or it
can challenge them. If a trade union uses terms that insult or demean people
with autism, this will suggest to autistic workers (and workers with caring
responsibility for people with autism) that the union does not understand or
empathise with them, and that if they get involved in the union they may face
prejudice.
In using the term ‘disabled people’, the TUC follows most of the British
disability movement. In the USA, the term ‘people with disabilities’ is more
common, and some British (and many Irish) disabled people follow this
American usage. The TUC does not regard ‘people with disabilities’ as
offensive.
In line with this, all the following are acceptable:
people (workers, etc.) with autism
people (workers, etc.) on the autistic (or autism) spectrum
autistic people (workers, etc.)
Words to avoid
Some terms definitely are offensive.
Trades unionists should know that words such as ‘retarded’, ‘defective’ and
‘handicapped’ are unacceptable. These words encourage people to think less of
their fellow workers, and some of them convey hate or contempt.
Words and phrases which present people as victims or pitiable reinforce
negative assumptions. It is not good to refer to autistic people as ‘suffering’
from autism.
Phrases like ‘differently able’ and ‘physically challenged’ can be patronising or
sarcastic, not egalitarian, and are not recommended by the British disability
movement.
Trades unionists should aim for a natural and relaxed style of speaking and
writing which avoids giving unnecessary offence.
Trades Union Congress Autism in the workplace 29Section nine
8 Hate crime
In 2013, Labour MP Ian Mearns introduced a Ten-Minute Rule Bill to require
the police to maintain a register of hate crimes committed against people with
learning difficulties, learning disabilities and autism. During the early months
of 2014, this Bill is progressing through its Parliamentary stages.
“Disability hate crime has no place in 21st century Britain but an alarming
number of people living with autism in the UK have suffered bullying,
exploitation and harassment. This has to stop.
“It is both shocking and sickening that people with autism become targets of
crime because of their disability, but unfortunately due to the social difficulties
people with autism experience it can leave them vulnerable to being taken
advantage of by unscrupulous individuals.”
Sarah Lambert, Head of Policy at the National Autistic Society, in response to
Ian Mearns’ Bill
“On 23rd June 2012, Steven Simpson, a gay autistic student, was verbally
abused, stripped, and his body scrawled with offensive slogans. He was then
doused in tanning oil and 20-year-old Jordan Sheard set fire to his crotch with
a cigarette lighter. The flames engulfed his body, his attackers fleeing as
neighbours tried desperately to extinguish the flames. Steven died the next day
suffering 60 per cent burns.
“Steven was murdered because of his sexuality and disability. However, on
21st March 2013 at Sheffield Crown Court, Judge Roger Keen dismissed the
crime as “good-natured horseplay” that had “gone too far” and sentenced
Sheard to only three-and-a-half years in prison. Sheard’s lawyer described
Steven’s killing as a “stupid prank that went wrong in a bad way". We
demand justice for Steven Simpson.
“We believe that the sentence given to Jordan Sheard does not reflect the
serious nature of the hate crime committed.
“We call on the TUC to support campaigns to raise awareness of hate crime
and the issues involved.
Trades Union Congress Autism in the workplace 30“We believe that due to his appalling comments Judge Keen is unfit to hear
cases such as this. We demand that his description of this attack as “good
natured horseplay” is legally overturned.”
Resolution passed by TUC Disabled Workers’ Conference 2013
Trades Union Congress Autism in the workplace 31Section ten
9 Autism and austerity
“We know that LAs [local authorities] have had their budgets slashed and are
making cuts which are impacting on adults with autism and families living
with autism. Families are being told that they will have to re-apply for Direct
Payments and respite is being shaved and in some cases cut altogether.
Provision to support families is also being removed.
“We are concerned that these cuts will make it even harder for children and
adults to access provision. We are concerned that even more adults will
continue to fall through the cracks, especially those without a generic learning
disability and that the postcode lottery that we currently have will continue to
spread.
“It is difficult to imagine that the Adult Autism Strategy Fulfilling and
Rewarding Lives - Increasing Awareness and Understanding of Autism
(England) and The Autism Strategy (Scotland) will be able to deliver what had
been hoped by the autism community. It is difficult to imagine that new
services for both children and adults will be commissioned while LAs and
CCGs struggle to maintain the services that they are already delivering.
“The wider implications of the cuts that the voluntary sector will experience
will result in higher volumes of families and adults contacting them for support
and information. This will place a considerable burden on the voluntary sector
who are already struggles in the face of cuts to their budgets from statutory
bodies.
“Charity used to be the icing on the cake – now charity IS the cake.”
Act Now for Autism
Examples of cuts and campaigns
Nottinghamshire’s Adults with Asperger’s Team is estimated to have supported
at least 10 per cent of the adult population living with Asperger syndrome in
the county. When Nottinghamshire County Council considered disbanding the
team as part of its plans to make £154m cuts, campaigners organised lobbying
an protests. The Council dropped the plan and continues to run the service.
In August 2013, concern was expressed that health cuts were leading to people
with autism being left undiagnosed in some local authority areas in Scotland.
NHS Grampian made cuts to its diagnosis service for local adults with autism;
the National Autistic Society Scotland (NAS) said that was symptomatic of
wider problems with diagnosis across Scotland.
Trades Union Congress Autism in the workplace 32Austerity-driven cuts to public services may also impact on people with autism
– both workers and service users.
Statement by Autistic-UK on London Underground cuts, January 2014:
“London Underground has announced that it plans to close all its ticket offices
and remove up to 1,000 staff from its stations. The company states that it is
consulting on these plans, so we hope it takes notice of our objections.
“Autism is a neurological difference, and autistic people may experience
difficulties with social and communication issues. Public transport, including
London Underground, is essential to allowing autistic children and adults to
access services and participate in society, but can be a difficult environment. It
can trigger sensory overload and can cause extreme distress when there is
unexpected disruption or an emergency. Moreover, we may find automated
ticketing systems hard to use and – with only 15 per cent of autistic adults in
full-time employment – can not necessarily access online payment methods.
“For these reasons, the presence of staffed ticket offices and adequate numbers
of staff on stations is essential to enable autistic people’s access to London
Underground. The plans announced by LUL will only serve to exclude autistic
people and further our social isolation.
“We strongly urge London Underground Ltd to rethink.”
Work Capability Assessments
In January 2014, the Court of Appeal upheld a ruling made the previous May
which found that the process used to decide whether hundreds of thousands of
people are eligible for Employment and Support Allowance (ESA)
disadvantages people with autism, learning disabilities and mental health
problems. The Court ruled that autistic people and others were disadvantaged
by the process of gathering evidence for Work Capability Assessments.
In Europe
“Amidst the recent budget cuts and austerity measures being implemented in
many European countries, people with Autism are suffering significant cuts to
the basic services they depend on for housing, health and education. How long
can we go on cutting spending on the most vulnerable people in society? Can
sacrificing human rights to save money possibly achieve positive outcomes?”
Nikki Sullings, Autism-Europe, 2011
Italy: 10 billion euro in funding cut in 2012–2013 from regional and local
health and social services.
Trades Union Congress Autism in the workplace 33Autism and austerity
Greece: 40 per cent cut to the state’s financial contribution to non-government
organisations and charities that provide essential services to people with
Autism, including supported living centres, announced in 2011.
Evelyne Friedel, President, Autism-Europe President:
“We are seeing these funding cuts across many European countries.”
“Providing support to people with disabilities is a human right – the
governments of Europe have confirmed that when they signed the Convention
[United Nations Convention on the Rights of Persons with Disabilities,
December 2010].
“It’s not acceptable to put the rights of people with disabilities aside when
financial difficulties arise.
“Governments and the European Union institutions must ensure that their
commitments under the UNCRPD are fulfilled and that persons with Autism
Spectrum Disorders benefit from the same opportunities as the rest of Europe’s
citizens.”
Trades Union Congress Autism in the workplace 34Section eleven
10Autism in parliament
The All-Party Parliamentary Group on Autism (APPGA) is a formal cross-party
backbench group of MPs and Peers who share an interest in autism and
Asperger syndrome. It was set up in February 2000. Its role is to campaign in
Parliament for greater awareness of autism and Asperger syndrome, and to
lobby the Government for improved services for people with autism and
Asperger syndrome, and their carers.
The official objective is:
“To raise awareness of issues affecting people with autism and Asperger
syndrome, their families and carers; to raise Parliamentary awareness of
autism; to campaign for changes to government policy to benefit people with
autism and Asperger syndrome and improve diagnosis or, support for, people
with autism and Asperger syndrome.”
The APPGA does not have any powers to introduce legislation, nor is it part of
Government. But it provides a useful platform for important and topical issues
around autism to be discussed and raised in Parliament.
Among its members, Labour MP John McDonnell MP has worked closely with
trade unionists on the issue of autism.
Trades Union Congress Autism in the workplace 35Section twelve
11A guide to the law
Definition of disability
Under the Equality Act 2010, a person has a disability if s/he has a physical or
mental impairment which has a substantial and long-term adverse effect on
his/her ability to carry out normal day-to-day activities. Autism should qualify
as a mental and/or physical impairment.
Unlawful discrimination
The following actions by an employer are unlawful under the Equality Act
2010:
Direct discrimination: treating a disabled (for the purposes of this handbook,
an autistic) person less favourably than other employees.
e.g. if an employer gives a bonus to all workers other than the autistic worker.
Indirect discrimination: applying a provision, criterion or practice that is
discriminatory in relation to an employee’s autism. ie. a provision that it does
not apply to non-autistic employees, or which puts autistic employees at a
particular disadvantage, and is not a proportionate means of achieving a
legitimate aim.
e.g. if a promotion application process includes a social skills test that is
irrelevant to the job being applied for and disadvantages an autistic applicant.
Discrimination arising from disability: treating an autistic employee
unfavourably because of something arising in consequence of that employee’s
autism, and cannot show that the treatment is a proportionate means of
achieving a legitimate aim.
e.g. if an employer dismissed an autistic worker because s/he rocked on his/her
chair at work, even though s/he performed adequately in his/her job.
Harassment: engaging in unwanted conduct related to the worker’s autism
which had the effect of violating that person’s dignity, or creating an
intimidating, hostile, degrading, humiliating or offensive environment for the
autistic worker.
e.g. making ‘jokes’ about autism, or imitating an autistic worker in a
derogatory fashion.
The Equality Act 2010 also requires employers to consider and, where
appropriate, implement reasonable adjustments: changes to the way things are
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